Master of Autism

Hello everyone my name is patricia davidson and i'm the vice chancellor of the university of wollongong and i'd like to welcome everyone to the empowering autistic and neurodivergent communities through research and practice webinar with world autism day only a few days away this webinar is a great opportunity to lead hear from leading experts in this area highlighting their research and practice our esteemed panel will discuss how working collaboratively with autistic individuals is an essential part of creating research and teaching initiatives that will lead to societal change and impact that makes a difference in the lives of autistic children adults and their families and even if we're not experts many of us have seen around our friends and families the complexity of dealing with autism and the many myths and stigma associated with this diagnosis so i'm incredibly proud that the university of wollongong is leading a crucial conversation to recognize the importance of clear accurate information and also the importance of data-driven decision-making and research before we begin the panel i would like to acknowledge the custodianship of the aboriginal peoples of this place and the space that has kept alive the relationships between all living things we at the university of wollongong acknowledge that country for aboriginal peoples is an interconnected set of ancient and sophisticated relationships the university of wollongong spreads across many interrelated aboriginal countries that are bound by this sacred landscape an intimate relationship with that landscape since creation today i'm delighted that our webinar will be moderated by professor david carrow who's deputy vice chancellor of health and sustainable futures at the university of wollongong professor curry joined the university of wollongong last year and is part of a newly created portfolio that aims to enhance and develop strategic relationships with government industry community and academic partners to focus on improving the health and well-being of the communities that we live work and teach in and also issues that impact the health of our communities globally professor carro has held senior leadership positions as the foundation chief executive officer of cancer australia which is the australian government's cancer control agency and recently he was the chief executive officer of the cancer institute new south wales which is our state control cancer control agency he's also a previous president of the clinical oncological society of australia thank you so much to everyone who's joined us today and i hope you're safe and dry and warm wherever you are and please note that this session will be recorded and there'll be an opportunity for questions and answers so i'll now pass over to david who will introduce the panel thank you so much thanks very much vice chancellor and welcome to today's webinar it's a great opportunity for us to share knowledge from experts in the field we have an international audience today and it's wonderful to see you all here to to learn and to share we have a distinguished panel today and it's a great pleasure to welcome all three of our speakers who are leaders internationally in their area of academic pursuit i'm going to begin by introducing professor Sandra Jones from the australian catholic university professor Jones is the pro vice chancellor research impact at the australian catholic university her role provides leadership advice and support for acu's strategic frameworks that implement the measurement of research engagement and impacts and supports research engagement and impact across the university's research areas Sandra also leads the autism research at australian catholic university including conducting research mentoring autistic academics and supervising honours and postgraduate students conducting autism research Sandra was recently appointed as a member of the autistic researchers committee of the international society for autism research including the scope of international collaboration in this space Sandra developed and leads a australian catholic university's autism at uni uh autism inclusion program which positions australian catholic university as a leader in the support of autistic university students prior to her current appointment Sandra was the pro vice chancellor engagement establishing australian catholic university engagement as a critical unit in advancing the quality consistency and awareness of its activities and community engagement and research engagement and whether she established the autism at acu research program and autism at uni inclusion program Sandra was previously director of the australian catholic university center for health and social research a research center focused on social marketing and community-based research Sandra joined the australian catholic university in 2014 after more than a decade as the founding director of australia's largest social marketing research group at the university of wollongong welcome Sandra elizabeth elwood is from the university of wollongong is dedicated to educating and supporting children families and professionals in developing socially inclusive early childhood settings specializing in how child development is impacted by neurodevelopmental disorders she is a passionate advocate for building workforce capacity and staff working with children challenged by developmental delays challenging behaviors and autism spectrum disorder elizabeth is an australian-based esdn certified trainer her work providing training and support to a global audience has resulted in the prestigious approval by emeritus professors sally rogers and geraldine dawson to acknowledge early start university of wollongong as an official esdm training site elizabeth has also completed her phd studies in autism intervention and published papers in peer-reviewed journals welcome it's great to have you here liz dr amanda webster from the university of wollongong is a community engaged researcher whose research is focused on creating meaningful social impact her research centers on leadership for inclusive education and community environments that support the achievement and self-determination of individuals diagnosed with autism or other disabilities and their families dr webster is currently a chief investigator on both an australian research council linkage and an australian research council discovery grant which examines the way in which school leaders utilize decision-making processes and pedagogies to support students with disability dr webster is a researcher in the australian autism center for research collaboration and a member of the australian society for autism research she has recently led university of wollongong to become a research partner in the center for research collaboration which involves partnerships between researchers autism organizations and autistic advocates across australia working with colleagues in the center for research collaboration dr webster recently completed a nationwide study to gather the perspectives of parents educators and students on the needs of students with autism spectrum disorder in schools as well as another study examining the emergent literacy needs of children on the autism spectrum she has been contracted to undertake consultative research with a number of groups and is involved in research to inform the government's implementation of the national disability insurance scheme she is actively involved in research projects with departments of education in queensland new south wales and tasmania and is conducting several major research initiatives focusing on the role of school leaders staff and parents in establishing effective school cultures and practices that will enable students with autism to achieve high quality outcomes across the life span dr webster's research has culminated in a number of peer-reviewed publications including three research-based books published by springer and routledge overviewing case studies and models of practice for empowering and supporting individuals on the autism spectrum in community and school settings welcome amanda so you can see we have uh a distinguished panel with a combined experience that can really uh take us forward in thinking about how to better support uh people uh with autistic or neurodivergent uh living in neurodiver with neurodivergent uh [Music] experiences through research and practice and so the question for us really is how can we take this forward the format for today is that there's going to be a panel discussion over the next half hour or so but please use the ability to ask questions which we're really happy to put to the panel as we need to we have a very wide-ranging audience today from people with autism spectrum disorder their families through to researchers policy makers and educators so it's a an audience with a wide range of uh of skills and i dare say expectations uh for uh the the meeting today but as we move forward i am sure that we will have an incredibly stimulating uh conversation so as we think about this i'd like to start with a question to each member of the panel and that really is how can we most empower people with autism spectrum disorder across the lifespan so let's start perhaps with uh with you Sandra if you're happy to uh to take that question um thanks david um empowerment's an interesting question just to start with um i think one of the the things that's probably really central there is language and and i i noticed and i'm sorry to be personal that when you were talking there language is is one of those things that's really tricky when we're talking about autism i i have a particular position as an autistic person so i'm very much an identity first person so i i will i will talk about autistic people uh i think there's so many debates around language around the way that we refer to things that um make it very very difficult to have open conversations so i you know people is it is it autistic person is it person with autism is a person on the autism spectrum one of the things that's really central i think to empowerment is is listening to the voices of autistic people around how do they wish to be spoken about how do they wish to be involved in conversations um and you know i don't want to get into those debates because i think some of those debates just really muddy the water and and actually create quite a hostile environment but sometimes we're so careful with with language that we actually don't get to to the really the core issues that as long as we keep seeing autism as something that's that's a disability something that needs to be sort of taken away from the person and you know i i understand that there are a range of issues that that parents struggle with that autistic people struggle with but if we're going to empower people we need to be saying not how can we change these autistic people but how can we change society how can we change these social barriers that we we put up for people um how can we actually maximize the strengths that autistic people have and provide them with the opportunities to survive and to thrive autistic people have a lot of strengths a lot of capacities and there's just not enough focus not enough research not enough emphasis on those in our schooling and i'm not just talking primary secondary schooling university education in employment we don't focus on those strengths we don't promote those strengths we don't talk to children in primary school we don't show them role models of successful autistic people out there in the community doing things the role models we do see show them tend to be very very narrowly focused autistic people are good at it we don't we don't show them there are successful autistic actors lawyers doctors nurses teachers parents um i i think the best way we can empower autistic people is by accepting people making it a safe environment for successful autistic people to come out and be open and say hey i'm an autistic person i have some challenges i have some support needs i have some things i need assistance with but i can make a really productive contribution we should be putting those voices in front of young people and in front of their parents and saying yes these people need some supports but look at the massive contribution they can make and you can achieve these things if society provides you with the supports and adjustments you need rather than focusing on your deficits thank you so much Sandra um liz your thoughts and reflections yes thank you david i'd like to add to what Sandra has said historically autism research and practice has been a deficit focused model only um and it's only in recent years that we've seen a shift away from these approaches to a more strength-based approach however there still remains a nuanced approach to these strengths-based approaches and i think because autism the autism community represents such a broad spectrum of individuals including those experienced autism those their families their carers the professionals working with all of these people as well the importance of those people being well informed and being well informed by the people experiencing autism in terms of any approach that is delivered to increase the knowledge of of everybody in the process thanks so much liz and amanda your your reflections on empowerment uh in in this uh critical setting okay and what i was going to talk about was really three sort of i'm sorry three court of key issues one is mutual respect the next is mutual communication and the third is a mutual commitment to finding shared commonalities of purpose and recognition of expertise so within that one of the things that i think mutual respect is really about is understanding that each of us whether we're autistic nor divergent or neurotypical brings a unique perspective and and knowledge base and recognizing that by coming together and recognizing the different expertise and knowledge and how we build that into for example co-production of research which we are doing at uow so it's recognizing that autistic individuals may not know all about research processes but they have a real unique perspective so how can we use that best to really maximize that research and the same thing with recognizing what you know the people not on the spectrum bring that enhances that experience as well so it's really about mutual respect and as santa mentioned there's also i think for those of us who are who are not identifying as autistic or neurodivergent it's also recognizing that we also both and actually both groups have to keep learning and i think the focus has always been on autistic people need to learn which i think lifelong learning is critical to everything but neurotypical people need to learn and under mutual respect we need to mutually listen and richly grow as well now with mutual communication i think one of the biggest barriers to empowerment and particularly co-production of practice and research with autistic and neurodivergent individuals is a barrier of communication so what we know is that we often communicate in different ways and so it's finding how each of us needs to communicate so in effective research you know there's alternative ways and i think for people who for one of a word typically you know communicate in what we say is the typical way it's scary to think of going outside that so we have to get past those perceptions to explore together what's the best way and we also have to be open to understanding that not all autistic and neurodivergent people need the same things so it's about engaging and asking them it's about finding out if if they're little kids or whatever from the people who know them best you know so for example some people are really fine with interviews some people want the questions and they want to write them down some people need some visuals to help and they need to draw it or do things in different ways um so it's about establishing that mutuality of communication and of course the respect and the last one is the shared commitment to finding commonalities of purpose and what i mean by that is we have um recently formed it was originally a community of practice has now become an association that we engage with a lot in co-production of research and practice and one of the things that that group was founded on was the idea that we are coming from different perspectives parents have a unique perspective autistic individuals have a unique perspective um teachers have unique perspective or other professionals or researchers we all have a unique perspective and it's all a valid perspective because it's our perspective and it's only by bringing that together and recognizing no we may not always agree but the power is we have a shared purpose that we recognize that those different perspectives can really contribute toward so what we were committed to in that group was really celebrate a unique perspective and using that to help us to maximize and and have a collective knowledge and a collective thing but what we were all committed to was the same thing and so unders and not getting so hung up on um not trying to make assumptions when somebody said something about their perspective but to work together to understand each other's perspectives not always agree but understand that having differing perspectives is a good thing not a bad thing and i think to me that's probably the essence of empowerment there's a lot of other things that could go on in a lifelong learning perspective but really to me if we talk about empowerment particularly in research and practice that's what we're really talking about it's at mutual's respect mutual communication and a shared commitment to finding that common purpose thank you so much i i hear from all three of our experts today that that this is a rapidly evolving area and that the the language continues to change our understanding and insights continue to change who'd like to reflect on on where we've come from in the last five years what what changes have there been so that today's uh um participants can really uh feel that they are up to date and for that we we need to know where we've come from and and where we've landed so far knowing that uh change will continue into the future what what are the changes in language what are the changes in the paradigm uh the paradigms around which we uh we build our understanding who'd like to uh to take that look coming congratulations thank you talk briefly and then i i i'm hoping Sandra will say something too and and liz but what i was going to talk about briefly is the fact of to understand where we're at we have to understand the history of this field and sadly i've been working in this field pretty much for 30 some years so i've seen a lot of history one of the things that i think and i get asked a lot is about why does there seem to be such a new focus the truth is the area around autism understanding autism recognition autism identity is a very young field actually you know it wasn't until 1980 that we even had us recognize criteria or characteristics that was done as a result of comprehensive research in the late 70s in the uk um and there's been rapid changes in understanding once you've shaped our knowledge um we're also not dealing with something that you can quantify in medical or physiological terms like some other things out there so you know one of the things that i think has happened is as you know people have grown some people have grown with that knowledge some people have not but we have moved rapidly from a very um in the early days a really a knowledge base of looking at this as a please forgive my language but i'm using the old sign language as a very deficit but also a very disorder that needs to be changed and a lot of treatments and interventions were based on that to really hopefully moving to a situation where we understand that we have to work with individuals and it's not about being like everybody else it's about empowering them and i like to say to be lifelong learners to gain the skills they need and more important to create the environments to use the skills they have in the best way possible so that's sort of our our focus and i think you know we're not there yet and there's a lot of researchers and professionals out there and and communicating that to parents which is also that are still in that predominant mode of treatment and intervention and trying to looking at um being autistic or neurodivergent as something that needs to bed is really a a problem that's going to create real significant negative impact for that individual in life so what we're trying to do with language and everything else hopefully is change the dynamic where we're looking at that's not the focus that the focus is really about giving them and building their capacity and i don't mean their capacity i mean everybody has to build their capacity in life so we need to treat you know individuals there is the same that they can get the skills and their knowledge no matter if they have um quite a lot of high level of language to those people who um do not express themselves verbally and so we have to recognize that looking at that the outward manifestation doesn't tell us everything about that individual and that's why it's so important to engage but i think you know we've still got a long way to go with that the other thing of course that's the most exciting trend is the development of the advocacy and the self-advocacy and the advocacy of the autistic individuals and the neurodiversity movement that you know really has come out of the 90s and 2000 really where we've got a lot of autistic individuals speaking up and really expressing their voice and i think that's one of the most exciting impacts in our field and we we need to not i think there's a danger though that i see that sometimes those people are highlighted as being oh aren't they special and unique whereas we need to be looking at no they're just expressing voice everybody has those strengths and everything so it's not looking at those people as oh they're so special and above and they're exceptional and and you hear this exceptional in the autistic community because they're able to do that no we need to look at that if that's the norm not the exception and everybody has a voice maybe not a literal outward verbal voice but everybody has a perspective they can share and so i think that's one of the most exciting things coming out that has impacted him and as you said people the autistic community owning that and telling us what their identity is and owning that and and i'm going to stop now because i think other people can speak to this more than i can Sandra um yeah i think when you say what's what's changed and what's new there's there's so much i mean i totally agree with everything that was just said it's it's a very rapidly um changing field in terms of your initial question about language probably the biggest ones would be around that you know person first or identity first language for a long time and you still see this a lot you know people are taught person first language you know you say person with autism and that very much comes from that idea that you know um as with a lot of other things we don't say the person is defined by their autism that's that that is supposedly respectful but it positions it as is something that's separate from the person you know that it's a deficit it's a you know we don't want to identify them as as as that it's something that you could take away that they'd be better off without which is why there's that strong objection from the autistic community so it is generally accepted in the community that it is more appropriate more respectful because you you don't say person with neurotypical you say neurotypical person so that's good and if you then say you don't say autistic person well by by definition you're then saying that's a bad thing that's an insult so you know i am an autistic person i was when i was born i will be when i die um it's part of who i am i'm also australian i'm also female um i'm also pretty happy um i am a person with a pink jumper i might have a different color tomorrow it's unlikely but i might i'm a person with a teacup um but i am an autistic person um another language thing that we've we've seen changed a lot is around the use of functioning labels you know they're talking about somebody as a high functioning autistic or a low functioning autistic which are actually very very harmful types of terminology if you say someone's low functioning you're totally underestimating their their capacity it's saying you know that person's not going to be capable of achieving anything if you call someone high functioning you're actually underestimating their challenges you know as someone would define me as high functioning you know i'm a pro vice chancellor of a university i have six university degrees i also can't go into the grocery shopping by myself and i have a whole bunch of social challenges that go with my autism um so you know functioning labels are problematic because they put people in categories and don't actually look at the whole person i would say the biggest change though isn't a language change it's our recognition of something we've always known but not really accepted which is autism is a lifelong condition it is not a condition that affects children but we still talk about it like it does if you look at the dsm you know the the bible of diagnosing people it still says a child has that is the diagnostic criteria it says child it doesn't say person if you look at the abs data the way that it's reported it talks about autism being more most prevalent in the age group of 5 to 14 14 which is ridiculous it's a lifelong condition we see higher rates reported in children because you know diagnosis is getting better and also in australia let's be realistic if you didn't get diagnosed as a child you're not getting diagnosed now because it's so ridiculously expensive because it's not covered by Medicare for an adult to get a diagnosis i think that's probably the biggest change is that we're finally starting to accept that this is a lifelong condition that we have a huge quantity of undiagnosed adults who are not receiving the supports that they need massive unmet need in higher education in employment unemployed autistic adults people who need support in aged care in all other aspects children don't grow out of autism we don't cure autism what we do is we hide our autistic adults we underemploy them we exclude them from society um so you know i think to me those are the big changes language is always going to change you know in years time we might have a different change in language the big change is that recognition this is a lifelong condition it's a condition that is a difference not just a disability it comes with challenges it comes with strengths it comes in all different forms and we need to change society and we need to address the barriers and provide supportive environments not fix the person fantastic uh liz to i would like to add to uh what both amanda and Sandra have said and uh bring it from an early childhood perspective which is is my area of expertise and i think one of the significant changes over recent years is the focus on inclusion and that inclusion in early childhood services in particular preschools long day care centers is is the norm and is funded by the federal government to become the norm so you know this is a wonderful step forward but however in so doing that this has created lots of challenges for the staff in these centers because they're lacking the knowledge and the skills they haven't had that in their pre-service training unfortunately in most cases and so the need for those differentiated teaching strategies that are tailored to meet the individual needs of children so that they are able to learn and participate to their fullest capability is what is most needed and the the building of that knowledge and capacity across mainstream service educators is is one of the major focuses that we are doing right now out of early start university of wollongong and the reason that that this is such a natural process is because the play-based pedagogies that characterize high-quality early childhood education and care settings actually lend themselves to some of the the evidence-based but more naturalistic early intervention approaches so these naturalistic early intervention process processes can be embedded in mainstream services to support children with asd and any other neurodevelopmental challenge to participate more fully alongside their typically developing peers through enabling environments and through informed pedagogical practices that facilitate inclusion for all children children with asd do have the right to be involved and confident learners with a strong sense of identity and well-being and this can only be really achieved through the building of skills and capacity in the educators in those settings so that they can make the adjustments to uh bring about full inclusion for these children thanks liz i i hear a theme coming through that we've got a workforce out there that uh may have some challenges in being current in their thinking and practice and whether it's in education or healthcare or social care the currency of the workforce is critical to changing the the path for tomorrow how are we going to deal with the enormity of of reaching people who may have graduated uh 10 20 30 years ago because we know that uh for those people uh change is unlikely without a specific investment people's thoughts on that i think one of the things that we can do is by taking in some ways that the easy way which is targeting our current students because they they are going to go into the profession and they in a lot of ways are the source of information for the people who are working in the health professions in the first stage they go out and they do placements you know we as as educators in universities should be making the changes now i mean i cringe every time i see a university program at any university that is teaching health professionals for example you know um ot's physios nurses to to use person first language um that is teaching people that you know they should be teaching children quiet hands you know no flapping um that is teaching people to use terminology or approaches or therapies that that we know are harmful to autistic people so i think that's the first step the first step is to make sure that the programs that we're running in universities now are actually autism friendly that are listening to the voices of autistic people i think we could be doing a much much better job of supporting autistic people to survive and thrive at university i don't think we're doing anywhere near a good enough job of of putting in reasonable adjustments to enable autistic people to achieve in those courses we need more autistic teachers nurses doctors physios every profession you know i have seen far too many autistic students in pretty much every australian university not get through their course because they were told you won't survive in this course because you can't do your placement because you know your communication skills aren't up to scratch or your eye contact's not good enough i tell you as an autistic person i would much rather have an autistic nurse an autistic doctor an autistic speech therapist an autistic teacher because they will understand me and my children better than most non-autistic people will so we should be making the changes we need to our courses to enable those people to thrive if we got more of those autistic people and non-autistic people who were properly trained to work with autistic people out there they could start to change those professions they could start to educate the people that they're working with they could be champions in schools in hospitals in all kinds of other environments it'll be great to get to those people who've been working out there 10 20 years but that's actually a harder task and if we made the changes now we'd be helping future generations as well i i agree it is a harder task Sandra um and that's really why i'm asking we there's absolutely every reason to change what we do currently but we know that that that's a slow road ahead uh liz or amanda i'm going to add two things to what Sandra said because i absolutely agree we need to be instilling this in our students and certainly at university of wollongong we have programs that we're trying to do all that there's two challenges with that and i think one of the primary ones is when our students do graduate and they go out into systems that are still so focused on that deficit medical based approach where only specialists can come in and promote communication when those specialists can come in and do things is is really it's sort of so destroying so it really undoes a lot of the things and they're also i get students that come into our courses they've never actually seen this in practice and so they have nothing to refer to so i agree that the more we can get autistic voices in here but also we need to be working at the higher level to get those foundational changes with how schools run so that they're more inclusive of everybody with how early childhood organizations are seeing and promoting play-based learning and stuff where they encompass and they feel more empowered to utilize their own natural skills and that well what i think about that is helping those practitioners to also see particularly in the idea of educators early childhood even parents that there are some natural it's you don't have to be a specialist there's a lot of good getting to know caring listening that actually will go a long way so you know if you get to know this student if you get to know your child if you work with them to figure out how to communicate if you go and you know get that you there's a lot more you can do that's on the ground just good effective stuff that will actually go a long way you don't have to wait until the specialist comes in there's we've still got such a specialization but i also think with our government and our we've still got um we still got a lot of driving mixed policies and mixed structures makes funding arrangements that are actually discouraging some of the practices that we need to have so we also need to be working at that bigger level to make sure that when the students go into these settings they get an opportunity to use those skills and those attitudes they've learned rather than hitting a wall of the opposite coming against them they don't feel like they're battling upstream a bit so i think it's also still working to create those better systems instructors both school policy uh environment things like that um that that can support those practices it's it's great to have people with the attitudes but we also don't want those to get squelched when they go into the workplace which is really important and and sadly happens sadly happens so we we've got to work at both and i think also as i said empower those innate particularly with parents and you know help them to see what things they already can do that they don't have to go get specialist training but work with them on a on a basic level to instil in their confidence and and early childhood is the same you know early childhood educators a lot of them already do fantastic things we just need to help them see how that connects to the needs of these individuals they don't have to be super specially trained there's actually a lot they can do already and helping them to find those connections is really important i think so in the couple of minutes before we open up to to questions from participants today when i read your bio Sandra the the issue around the program that you've developed autism at uni inclusion program can you just describe that to uh to members of the audience that may not have come across it before and what your what forms it and what it's achieving um thanks david so um i have i have a very strong passion for having more autistic students survive at university and a view that the reason that we have such high dropout rates isn't because autistic students don't have the intellectual capacity it's because we don't have sufficiently inclusive universities and i looked around at what other universities were doing and a lot of universities have mentoring programs which are wonderful and i went and visited lots of them and what they said was they work really well but they're really frustrating because they are limited by they provide the mentoring and then the students identify other barriers and the mentors can't help so i wanted to look at what do we need beyond mentoring but i also discovered that every program had been developed and implemented by neurotypical people so i went back to scratch i recruited autistic students and autistic alumni from our university and talk to them about what would a mentoring program look like but what else do we need beyond the mentoring program so we developed quite a comprehensive mentoring program with training for the mentors and the mentees we have an advisory group that consists of autistic students and alumni from the university and from other universities that guides all of our activities so as well as the mentoring we provide study skills we provide a whole range of resources around things to assist students in settling into university finding out more we run student projects we provide things like sensory maps of the campus information on things like reasonable adjustments understanding the university we run awareness programs we have sensory rooms on campus so there's somewhere quiet that you can go and escape from things we provide a range of other resources and information we do activities with the library we have social activities so basically our students come to us and they say this is something else that would be helpful for us as autistic students and our advisory group gets together and works out how we can actually make that happen so it's really very much driven by the autistic students what do they need to make university more inclusive and more supportive and more welcoming and then all of the activities are driven by autistic students and alumni who review all of the activities we do and then we implement them across our campuses that's a fantastic overview and i'm sure you'd be delighted for uh members of the audience to reach out and get more details about that Sandra but what a what a fantastic program absolutely be very welcome to discuss it great thank you we've got a couple of questions from uh from the audience and uh we've touched on diagnosis already the first of those questions is is it helpful for people to have an actual diagnosis or can they self-assess and just identify uh as being on the autistic spectrum uh disorder i'm sorry i'm gonna have to jump in and answer that one um i'm gonna you know call dibs as the person with the diagnosis on the panel um as a question i get asked a lot by autistic people you can absolutely self-identify and i have to say self-identification is absolutely valid um particularly in as i mentioned before our our system where it's expensive to get a diagnosis so it really is a barrier for people a lot of people ask me though is what's the benefit as an adult of having a diagnosis you know it's too late for early intervention if you've already coped through most of your life you're probably not going to get ndis what's the benefit personally i think there's lots of benefits for a diagnosis there's the it's it's self-affirming in a lot of ways it helps you really understand yourself better i think it helps you understand a lot of your challenges helps you connect to the community for me i found it very empowering in terms of being able to advocate for myself in the workplace in other areas um i i think the biggest change i would like to see in australia would be for our government to actually fund adult diagnoses i think it would have huge positive impact for the mental health and well-being of autistic people and really really make a difference so self-diagnosis is valid and for many people it's the only option you've got but i think an actual diagnosis brings a huge amount of benefit that's not just my opinion i've done research and i do have evidence and i know we've got limited time so i can't share all that now but yeah i think there are a lot of benefits to diagnosis at any age liz or amanda thoughts on on that i just want to add some quickly and i i totally agree with Sandra about adults but it ain't cheap for children either and we have real barriers and the two other reasons for diagnosis which come up and sadly i wish this were not the case but one is it can protect your rights in some ways it can the other one is and i i think the first one is that sense of belonging and identity that people tell me but the other one is that um sorry can affirm your rights and the truth is that sometimes it's the gateway to getting support i wish that was not the case i it shouldn't be but unfortunately at the moment it is and i will say that we do even with children because of the way that things are recognized in different sunset systems that sometimes the diagnosis can be quite expensive and it's different than it is with other conditions so there's a lot more expense within getting a diagnosis of autism than there is with getting a diagnosis of intellectual disability for example in order to access certain funding things so i think yes it's very bad for adults but it's also very it's not great for children either and families it can be quite uh problematic so but i i i will support everything sanders said that you know i have some reasons as well as anybody's interested in about the belonging and i don't want to speak from a rehearsal i'm speaking from what people have told me so and liz i saw you come off mute yeah i agree with both Sandra and amanda of course and again coming from the early childhood perspective yes diagnosis for children with asd is not only expensive but there's a very long wait list right across australia you know six months to 12 months um is is a typical wait list but once that diagnosis is made then it does challenge all of the people in that child's life to make the necessary adjustments uh which which is the wonderful thing you know we we learn we all learn so much from working with young children with asd and and without them we would be very ordinary in our practice great thank you for that um as a fellow disability and media researcher i'm keen to know if the panel sees anything that should give us confidence that specialized schools are going to disappear answer to that is sadly no however that would be my goal and it's certainly the goal one of the things that we've changed in our programs here and certainly in the work we're doing here is really saying that foremost we need to be looking at the human rights model and how we um provide services supports in our our attitudes and how that shapes and basically saying that our first and foremost assumptions should be it's the right of every child to belong and every adult to belong in the society and our whole focus should be on chipping away at the barriers that are preventing that person from participating fully from protributing to their society and from a feeling that sense of success well being an achievement and of course that's in the eye of the individual and what they want to be doing unfortunately we need to chip away at those ideas that specialist schools are really needed to give these people the special unique things they need unfortunately they do prevent they do present i believe lifelong barriers um certainly there is sometimes specialized instruction that's needed for any individual in any setting um to get something but um the long and short of that is at the moment the way we're going i don't see those as going away and i will give you an example and i will not name the place this happened but there was an inclusive education award given in a state recently in an education department it was actually given to a special school so the problem i think one of the key barriers is we don't really understand what a lot of people have real mixed feelings about what it means to be included in society and what it means to be included in education as a pathway to inclusion in society and so really that it is the right and the assumption should always be on the capacity and the right of the person to be there rather than people having to prove they can be there and the one i hear all the time is he can't be there because he can't cope and instead of saying we can't cope what is it that needs to change in the environment or the person needs to to learn how to do in order to be able to feel confident successful in that setting so that's that's the short answer to that or the not so short one but um we need to keep chipping away at that though for sure thank you so much um we've got uh some questions that we won't be able to get to today and we will uh uh make sure that uh there is um uh those questions are put to the panel and they'll have an opportunity to engage with the people who've asked them so thank you to uh the people who have posted questions that's been really incredibly helpful so what have we learned from today i i think uh for someone uh who is from outside this uh this area of uh academic pursuit i've i've learned a lot uh firstly i've learned that that liz is here and should be at the pub she submitted a phd today so the fact that she's here is way above and beyond what what else have we learned i think we've learned that a strengths-based approach is going to be absolutely critical as we move forward uh and that that is uh a strength-based approach that uh works uh for people with uh neurodivergent um conditions as well as for for the rest of uh the community and there's responsibility in both sides uh to actually make this work to seek out the strength seek out people's uh uh strengths support people and their families we haven't spent a lot of time uh touching on families today but that really is uh absolutely critical as we uh think about this that we are lifelong learners for a lifelong condition and i think that has come through very strongly in in the discussion today and although our data may reflect um the experiences of children those data are not accurate and are not reflecting what's happening across our our community this is a lifelong diagnosis and as we work with people we can indeed help right across the life cycle it'll be important in in future webinars to think about some specific groups including the elderly in that space because i'm not sure that we have prepared a social or health system that is going to to work in that that space that co-production of both practice and research is critical that we've got a long way to go in ensuring that the workforce is across key developments in this area as the research moves along and i really do like the point that you made amanda that uh really we're we're talking about a 40-year period to get to where we are today that's a very short period uh in terms of uh of research particularly research into practice and into policy if there's a time lag of up to two decades as new evidence becomes available that really is an enormous challenge so as a young field extraordinary things have happened but we have so much further to go and so i'd like to thank each of the panelists not only for your time today but for the extraordinary work that you continue to do that creates you as experts in order to be on the panel today for your advocacy for your passion in this area and for the leadership that you [Music] continue to show to each of you thank you for sharing your wisdom and and your thoughts and to everyone who's here online today uh thank you for making the time i hope this has uh been uh useful uh please reach out to the panelists uh afterwards uh as other questions or comments arise and as i say key questions will be posted uh in the the couple of questions to which we uh to which we didn't get so uh thank you for your time have a wonderful day and uh i hope this has uh uh taken forward your understanding of uh the opportunities uh for neurodivergent people uh to live fuller lives right across the lifespan and across our community have a great day